Lewis had a solid day today. The antibiotics seem to be kicking in. He's breathing easier, down to 1 liter of pressure and room air (no added oxygen) on his nasal cannula as of 8:45pm. He was sleepy most of the day, but when he was awake, he was much more animated - mostly crying and trying to pull out the cannula and his feeding tube.
Unfortunately, most of the focus today wasn't on Lewis. The focus was on fighting with insurance to sort out why/when/where they wanted to move him, since Georgetown does not have a contract with our insurance. To make a very long story (6+ hours, a few dozen calls) very short, we won. The communications breakdown within our insurance company itself was either comic or tragic, depending on your viewpoint, but shocking either way. In the end, we were able to get the parties within the insurance company, at the hospital and the third party case management firm on the same page. We won our appeal and everyone seems to be okay with letting Lewis stay at Georgetown, definitely for the immediate future and likely until he is discharged.
In case we haven't mentioned it lately, thanks again for all your support, we really, really appreciate it. Nate and I had a great time trick or treating with some friends up the street - he dressed up as Bob the Builder, which seemed fitting...
Friday, October 31, 2008
Thursday, October 30, 2008
Two Steps Back
Rough day at the NICU for Lewis. Joanne (Josh’s sister) and Jenn arrived and heard that Lewis’ secretions had been sent off to be cultured…it looked like perhaps the antibiotics for pneumonia hadn’t done the job…or perhaps he had aspirated into his lungs again. Just after we arrived, Lewis vomited quite a bit. On one hand, this is good, because it shows he has the reflexes to do this. On the other hand, the vomit was a greenish color and ended up on Jenn. From this green color, we were pretty well able to determine that Lewis might need more antibiotics.
Respiratory - Lewis was struggling to breathe and sounded very congested. He was able to cough on his own (good!) but needed more frequent suctioning to get rid of the large amount of secretions he produced. He needed more help breathing and ended up with a nasal cannula (breathing tube) inserted again with 40% oxygen. (There’s 21% oxygen in the normal room air.) After having the extra boost of oxygen from the nasal cannula, he appeared to rest more easily.
They did an x-ray and determined that Lewis has pneumonia again. The doctor sent an order out to get antibiotics for Lewis, and suspected the infection had spread to Lewis’ blood, so they put in an order for a blood culture. Then they had to have an IV re-inserted so that they could administer the antibiotics. Lewis didn’t like having the IV inserted, so the first time, he kicked it out.
Speech - Lewis was exhausted and slept through his speech therapy. All in all, he was pretty “floppy” today and not himself; likely because he doesn’t feel well.
Physical Therapy - it’s also possible that Lewis just had a rough workout. The physical therapist said Lewis was awake and did a great job today with his therapy, which happened early this morning. His trunk development is still a bit less than optimal but his arms and legs are doing well, as evidenced by his ability to pull out his IV by himself.
Feeding - with the additional calories Lewis is being fed, his weight has stabilized. Jenn was able to talk briefly to the surgeon about the potential Nissen surgery, but until Lewis feels better and has a week of antibiotics in his system, the surgery’s on hold.
Last Straw - we heard from the surgeon that Kaiser, the insurance company, didn’t have a contract with Georgetown Hospital and that Lewis would have to be moved to Children’s Hospital (much farther away) to have this surgery. As you might imagine, this is NOT the best scenario for Lewis as he has great care at Georgetown and this is already his second hospital experience. (He was born at Arlington Hospital.) We are pursuing this right away with the insurance company because a baby with pneumonia shouldn’t be going anywhere.
Late day update - by 4:30, Lewis’ nasal cannula was down to room air (no added oxygen) at 2 liters and he was sleeping comfortably, at 8:30 he was awake and still doing fine.
Respiratory - Lewis was struggling to breathe and sounded very congested. He was able to cough on his own (good!) but needed more frequent suctioning to get rid of the large amount of secretions he produced. He needed more help breathing and ended up with a nasal cannula (breathing tube) inserted again with 40% oxygen. (There’s 21% oxygen in the normal room air.) After having the extra boost of oxygen from the nasal cannula, he appeared to rest more easily.
They did an x-ray and determined that Lewis has pneumonia again. The doctor sent an order out to get antibiotics for Lewis, and suspected the infection had spread to Lewis’ blood, so they put in an order for a blood culture. Then they had to have an IV re-inserted so that they could administer the antibiotics. Lewis didn’t like having the IV inserted, so the first time, he kicked it out.
Speech - Lewis was exhausted and slept through his speech therapy. All in all, he was pretty “floppy” today and not himself; likely because he doesn’t feel well.
Physical Therapy - it’s also possible that Lewis just had a rough workout. The physical therapist said Lewis was awake and did a great job today with his therapy, which happened early this morning. His trunk development is still a bit less than optimal but his arms and legs are doing well, as evidenced by his ability to pull out his IV by himself.
Feeding - with the additional calories Lewis is being fed, his weight has stabilized. Jenn was able to talk briefly to the surgeon about the potential Nissen surgery, but until Lewis feels better and has a week of antibiotics in his system, the surgery’s on hold.
Last Straw - we heard from the surgeon that Kaiser, the insurance company, didn’t have a contract with Georgetown Hospital and that Lewis would have to be moved to Children’s Hospital (much farther away) to have this surgery. As you might imagine, this is NOT the best scenario for Lewis as he has great care at Georgetown and this is already his second hospital experience. (He was born at Arlington Hospital.) We are pursuing this right away with the insurance company because a baby with pneumonia shouldn’t be going anywhere.
Late day update - by 4:30, Lewis’ nasal cannula was down to room air (no added oxygen) at 2 liters and he was sleeping comfortably, at 8:30 he was awake and still doing fine.
Wednesday, October 29, 2008
Angry Young Man
Last night and early this morning, Lewis pulled out his naso-gastric feeding tube. Twice. Apparently he was feisty and wide awake overnight. The overnight nurse told us that he was pretty upset and that he'd "figured out the game" - crying until someone picks him up. Then he slept all day, deeply. Including when we visited. He slept through speech therapy at noon. We tried changing his diaper, changing his outfit, tickling his feet, even washing his face with a cool washcloth. He just wouldn't wake up for us. I'm sure he's wide awake now...
Feeding - Lewis lost about 40g (~1.5 oz) at last night's weigh in. They've upped his milk to 28 ml/h and are still adding calories to help him maintain his weight. Still waiting on the consult from the pediatric surgeon about the Nissen surgery - seems more like a "when" than an "if" decision, at this point.
Speech - slow progress, especially since Lewis slept through the whole thing. Even sleeping, he will suck on a finger or pacifier intermittently. Still no progress swallowing, as far as we can tell.
The outfit Lewis has on now has little mittens over his fingers to keep him from yanking on his feeding tube, so hopefully tonight will be a little more peaceful. We're again concerned about the slow pace of progress, but at least we seem to be moving in the right direction.
Feeding - Lewis lost about 40g (~1.5 oz) at last night's weigh in. They've upped his milk to 28 ml/h and are still adding calories to help him maintain his weight. Still waiting on the consult from the pediatric surgeon about the Nissen surgery - seems more like a "when" than an "if" decision, at this point.
Speech - slow progress, especially since Lewis slept through the whole thing. Even sleeping, he will suck on a finger or pacifier intermittently. Still no progress swallowing, as far as we can tell.
The outfit Lewis has on now has little mittens over his fingers to keep him from yanking on his feeding tube, so hopefully tonight will be a little more peaceful. We're again concerned about the slow pace of progress, but at least we seem to be moving in the right direction.
Tuesday, October 28, 2008
9 lb Houdini
Lewis likes to keep an eye on the action. His crib is on the perimeter of the NICU, so he prefers facing his right. Unfortunately for him, newborns are supposed to change positions frequently to keep their head shape and neck muscles developing properly. The nurses roll blankets and wedge the babies in to keep them in position. Today, the nurse told us that when Lewis is facing the outside of the room, he wiggles until he is flat on his back and then turns his head back to the center of the room. If only he'd focus that energy on sucking and swallowing. We put a mirror on the left side of his crib - maybe he'll stay put.
Not too much other excitement today. We're still waiting for the consult from the pediatric surgeon regarding the Nissen surgery and the G tube. Lewis' IV started to leak, so they've taken it out and stopped the antibiotics as of today (day 9 of the antibiotic cycle). They'll continue to culture his chest secretions to make sure he's through the infections.
Physical Therapy - continued to make small improvements. Slightly better trunk strength, Lewis is trying to lift his head when he's on his tummy. His eyes are tracking and he shows a preference (as we all know) for his right side over his left.
Feeding - still no swallowing. Lewis continues to make slow progress sucking. Calories are being added to all the milk he's getting (thanks Mom!) to make sure he maintains his weight. Lewis' NG feeding tube was moved down a few centimeters past his stomach to make sure it was in the right place. The nurse thought that this was just the result of him growing while the tube was in (as opposed to the tube being pulled out).
Not too much other excitement today. We're still waiting for the consult from the pediatric surgeon regarding the Nissen surgery and the G tube. Lewis' IV started to leak, so they've taken it out and stopped the antibiotics as of today (day 9 of the antibiotic cycle). They'll continue to culture his chest secretions to make sure he's through the infections.
Physical Therapy - continued to make small improvements. Slightly better trunk strength, Lewis is trying to lift his head when he's on his tummy. His eyes are tracking and he shows a preference (as we all know) for his right side over his left.
Feeding - still no swallowing. Lewis continues to make slow progress sucking. Calories are being added to all the milk he's getting (thanks Mom!) to make sure he maintains his weight. Lewis' NG feeding tube was moved down a few centimeters past his stomach to make sure it was in the right place. The nurse thought that this was just the result of him growing while the tube was in (as opposed to the tube being pulled out).
Monday, October 27, 2008
Sleeping Beauty
We hit the hospital in shifts today. Jenn visited from morning to early afternoon, I spelled her at lunchtime and dropped in again after work. Lewis slept all morning - including all the way through his physical therapy. He woke up when I was holding him and screamed for half an hour, then promptly fell back to sleep when I passed him back to Jenn. I don't blame him :) The Doc thinks Lewis is looking better over the last couple of days that she's been on.
Speech - the therapist was happy with his progress sucking, which amounts to a few seconds at a time with long breaks in between. He's also doing better at accepting a pacifier, in small increments.
Respiratory - no progress on swallowing secretions, but Lewis is making progress on beating the pneumonia, his lungs are clearer and he didn't need suctioning as often today. His last dose of antibiotics is tomorrow night, then he should be done with his IV.
Feeding - Lewis lost a little bit of weight over the last few days, so they're adding some calories to the milk he's getting. He'll be having a consult with a pediatric surgeon over the next few days to see whether he's a good candidate for the Nissen surgery and the g-tube for feeding.
Later today, Lewis was sleeping so peacefully that I didn't want to pick him up and wake him. When he does get cranky tonight, he gets to try the infant swing.
Speech - the therapist was happy with his progress sucking, which amounts to a few seconds at a time with long breaks in between. He's also doing better at accepting a pacifier, in small increments.
Respiratory - no progress on swallowing secretions, but Lewis is making progress on beating the pneumonia, his lungs are clearer and he didn't need suctioning as often today. His last dose of antibiotics is tomorrow night, then he should be done with his IV.
Feeding - Lewis lost a little bit of weight over the last few days, so they're adding some calories to the milk he's getting. He'll be having a consult with a pediatric surgeon over the next few days to see whether he's a good candidate for the Nissen surgery and the g-tube for feeding.
Later today, Lewis was sleeping so peacefully that I didn't want to pick him up and wake him. When he does get cranky tonight, he gets to try the infant swing.
Sunday, October 26, 2008
Lazy Sunday
Today was pretty relaxed in terms of medical updates. Lewis slept peacefully most of the day. When he's awake, he's making some progress learning to suck - he'll latch on to your pinkie finger for a little bit.
Lewis is crying more often, too. Real crying. As far as we're concerned, this is a good thing - it means he has the extra lung capacity and coordination to cry out loud. He seems to like his new mobile, and his secretions seem to have decreased. He's handling his feeding well too.
Lewis is crying more often, too. Real crying. As far as we're concerned, this is a good thing - it means he has the extra lung capacity and coordination to cry out loud. He seems to like his new mobile, and his secretions seem to have decreased. He's handling his feeding well too.
Saturday, October 25, 2008
Noodles - Saturday Oct 25
We didn't meet with the doctors today. We just met with Lewis. Nate and Uncle Jordan met Lewis for the first time. Nate calls his baby brother Noodles (a name he picked out well before Lewis was born). Nate looked a little nervous in the waiting area beforehand.
(thanks to Uncle Jordan for the great pics today)
Today was mostly about cuddling with Lewis. He's breathing well, but still having the same problems with not swallowing his secretions. His feeds are up to 26 ml/h of milk and should stay there for a while, he's no longer getting any other IV feeds (just meds via IV). Jordan, Nate and I visited for the morning and Jenn stayed for much of the afternoon, joined by Hank & Judy (aka Didi & Bop).
Very little else to report. Lewis is sleeping a lot and seems to have cleared some of the congestion in his lungs, according to the nurse. Nate did really well visiting Lewis. When he got tired of looking ("He doesn't talk? Does he like Thomas? Does he have any toys?") Nate drew a picture, which is now hanging in Lewis' crib.
Friday, October 24, 2008
More Uncertainty - Friday Oct 24
When we look too far past the present, in this sort of situation, the range of unknowns becomes overwhelming. We took this lesson to heart almost two weeks ago - Jenn and I stick to thinking about Lewis' condition today and we don't get past our hopes for tomorrow, and things go okay. Unfortunately, today's 'family meeting' with the NICU neurologist forced us to move outside that manageable window.
The neurologist's prognosis for Lewis is "very guarded". Physically he felt that Lewis has made progress, but still thought that he was 'hyperexcited'. The MRI showed lesions on the part of the brain called the Basal Ganglia. Apparently it is difficult to differentiate the severity of the lesions at this stage. The Doctor explained that this portion of the brain regulates communication to/from the rest of the body. He expects that Lewis' "degree of deficit could range from moderate to quite profound" and that we should expect that he will require "comprehensive services" to include physical and occupational therapy and a bunch of other stuff that I didn't catch. He wasn't really willing to define "moderate" or "quite profound".
Though he shows no signs of seizures right now, they'll keep Lewis on the phenobarbitol until he outgrows the dose, rather than lowering it. That should equate to about 4 to 6 months. The next MRI will take place in 4 to 6 weeks, which may tell us more.
Respiratory - today was the first day that the doctors referred to the infection Lewis has as pneumonia (at least in front of us). This isn't as big a concern as one might think, since Lewis has been on the appropriate antibiotics since last Sunday. It isn't hard to see how he got fluid in his lungs, since he still isn't managing his secretions (swallowing). On the bright side, he is breathing just fine without any support (other than occasional suction to remove the junk he doesn't swallow) and coughing more - which helps protect his airway.
Feeding - up to 24 ml/h of milk today, which is a full diet, so Lewis has been taken off of IV nutrition. We also learned that his NG tube is in his duodenum (below the stomach) which is why they think he's had fewer digestive problems recently. They may challenge him by moving the tube back up to his stomach, but that's a ways away.
Speech therapy - the therapist spent about half an hour showing us different ways to work with Lewis on stimulating his rooting and sucking behaviors. She feels that he's made some progress this week, but I didn't write down all the details, so that's all I can tell you.
The plan over the next week is to intensify all of the physical therapy and treat the pneumonia. If Lewis doesn't make progress on sucking and swallowing, it is very likely that they'll perform a Nissen Fundoplication and put in a gastric feeding tube, so that he can come home more quickly.
I just reread this post. The part about the neurologist meeting sounds awfully negative. I understand that the docs can't see the future any better than the rest of us. Their task, when informing parents, is just about impossible. I'm not angry with them, or trying to "kill the messenger" - it just seemed to be the best way to convey the tone of the meeting.
Lewis is sleeping peacefully at the moment and apparently threw quite a fit when the nurse woke him up earlier, including audible crying. Nice work little man.
The neurologist's prognosis for Lewis is "very guarded". Physically he felt that Lewis has made progress, but still thought that he was 'hyperexcited'. The MRI showed lesions on the part of the brain called the Basal Ganglia. Apparently it is difficult to differentiate the severity of the lesions at this stage. The Doctor explained that this portion of the brain regulates communication to/from the rest of the body. He expects that Lewis' "degree of deficit could range from moderate to quite profound" and that we should expect that he will require "comprehensive services" to include physical and occupational therapy and a bunch of other stuff that I didn't catch. He wasn't really willing to define "moderate" or "quite profound".
Though he shows no signs of seizures right now, they'll keep Lewis on the phenobarbitol until he outgrows the dose, rather than lowering it. That should equate to about 4 to 6 months. The next MRI will take place in 4 to 6 weeks, which may tell us more.
Respiratory - today was the first day that the doctors referred to the infection Lewis has as pneumonia (at least in front of us). This isn't as big a concern as one might think, since Lewis has been on the appropriate antibiotics since last Sunday. It isn't hard to see how he got fluid in his lungs, since he still isn't managing his secretions (swallowing). On the bright side, he is breathing just fine without any support (other than occasional suction to remove the junk he doesn't swallow) and coughing more - which helps protect his airway.
Feeding - up to 24 ml/h of milk today, which is a full diet, so Lewis has been taken off of IV nutrition. We also learned that his NG tube is in his duodenum (below the stomach) which is why they think he's had fewer digestive problems recently. They may challenge him by moving the tube back up to his stomach, but that's a ways away.
Speech therapy - the therapist spent about half an hour showing us different ways to work with Lewis on stimulating his rooting and sucking behaviors. She feels that he's made some progress this week, but I didn't write down all the details, so that's all I can tell you.
The plan over the next week is to intensify all of the physical therapy and treat the pneumonia. If Lewis doesn't make progress on sucking and swallowing, it is very likely that they'll perform a Nissen Fundoplication and put in a gastric feeding tube, so that he can come home more quickly.
I just reread this post. The part about the neurologist meeting sounds awfully negative. I understand that the docs can't see the future any better than the rest of us. Their task, when informing parents, is just about impossible. I'm not angry with them, or trying to "kill the messenger" - it just seemed to be the best way to convey the tone of the meeting.
Lewis is sleeping peacefully at the moment and apparently threw quite a fit when the nurse woke him up earlier, including audible crying. Nice work little man.
Thursday, October 23, 2008
Roller Coaster
Emotions in the NICU completely redefine volatility. By comparison, the financial markets are a bunch of weenies. Almost all the news we received today was positive. Though we are extremely cautious and guarded in our optimism, today is a much better day than yesterday.
Last night's MRI went better. Lewis was sedated, intubated, MRI'd and extubated uneventfully. We're meeting with the neurologist tomorrow to get more detail on the results. Preliminarily, the attending physician told us that there were "some lesions deep in his brain, but overall it looked much better than I expected".
Respiratory - the doctors caved - Lewis won the nasal cannula battle. He had been yanking at it whenever he was awake. Today, they decided he didn't need it. He's been without it since this morning and so far so good. He's still not swallowing his secretions, but he is coughing more, which is a good sign.
Feeding - 18 ml/h right now through the naso-gastric tube, with plans to go up to 21 ml/h tonight. 21 ml/h is full feeding, so he'd be taken completely off his IV nutrition at that point. (He'll still have the IV for clear fluids and meds, but not food). So far, no reflux, the Reglan seems to be working.
Tests - the positive Staph culture from Sunday is not MRSA (antibiotic resitant staph). This means that the antibiotics Lewis has been on since Sunday are the right ones for both the Strep B and Staph.
Full day tomorrow. We have meetings with the speech therapist and neurologist and a couple of other Doc appts. I'm going to go visit Lewis now.
Last night's MRI went better. Lewis was sedated, intubated, MRI'd and extubated uneventfully. We're meeting with the neurologist tomorrow to get more detail on the results. Preliminarily, the attending physician told us that there were "some lesions deep in his brain, but overall it looked much better than I expected".
Respiratory - the doctors caved - Lewis won the nasal cannula battle. He had been yanking at it whenever he was awake. Today, they decided he didn't need it. He's been without it since this morning and so far so good. He's still not swallowing his secretions, but he is coughing more, which is a good sign.
Feeding - 18 ml/h right now through the naso-gastric tube, with plans to go up to 21 ml/h tonight. 21 ml/h is full feeding, so he'd be taken completely off his IV nutrition at that point. (He'll still have the IV for clear fluids and meds, but not food). So far, no reflux, the Reglan seems to be working.
Tests - the positive Staph culture from Sunday is not MRSA (antibiotic resitant staph). This means that the antibiotics Lewis has been on since Sunday are the right ones for both the Strep B and Staph.
Full day tomorrow. We have meetings with the speech therapist and neurologist and a couple of other Doc appts. I'm going to go visit Lewis now.
Wednesday, October 22, 2008
Wednesday 10/22
We're working very hard to stay positive today, and you've been a huge help. There's no possible way that we can return all the supportive messages we've received - via email, phone, mail, in person or even just telepathically. Thank you, thank you, thank you. It means a tremendous amount.
Today was tough. Jenn and I spent a good chunk of the day at the NICU. The good news is that Lewis was about the same. Very cuddly and alert, but still having trouble handling his saliva, mucus and milk - not swallowing. In our meetings with the doctors today, we learned that the plateau of Lewis' progress over the last couple of days is, in fact, a big cause for concern. They believe the inability to swallow is indicative of weak brainstem function. They do not believe that progress in learning to swallow is being inhibited by his meds or the nasal cannula. We were told that Lewis' impairment is likely to be significant (though they've no idea what form it may take), and that he is not close to coming home from the hospital at this point.
Respiratory - pretty much unchanged, still on a nasal cannula at 3 l/h. It looks like Sunday night's infection symptoms were caused by some fluid aspirated into the lungs, x-rays continue to show that things on the right side are a little hazy. Tests showed Strep B and Staph in the sputum cultures, but everything else was negative. Antibiotics were changed to treat these bacteria.
Feeding - continuous feeds had to be turned down (to 10 ml/h) last night because Lewis was continuing to have reflux. Feeds were back up today (15 ml/h) , and Lewis was tolerating them okay. He's now on Reglan, in addition to Zantac. The reflux is a real concern at this point. If it does not respond to these medicinal treatments, they will consider a surgical repair called a Nissen fundoplication. Either way, he'll eat through a tube until he learns to suck and swallow effectively, but we're told that some kids do go home while still being tube fed.
Neuro - last night's MRI was a no-go, Lewis was wide awake and wiggly at 3AM (Jenn points out that he's sharing the room with a dozen nurses, so cut him some slack). Tonight, he'll be sedated and intubated (put on a ventilator) for an MRI. If we understand it right, the results may tell us if there is significant damage to any part of his brain. An "all clear" MRI is a better sign, but doesn't mean we're out of the woods. More on that tomorrow, I guess.
Thanks again for all your support. We wish we could get back to everyone individually, but in the interim, please know that we're hanging in there, and we really appreciate your support.
Today was tough. Jenn and I spent a good chunk of the day at the NICU. The good news is that Lewis was about the same. Very cuddly and alert, but still having trouble handling his saliva, mucus and milk - not swallowing. In our meetings with the doctors today, we learned that the plateau of Lewis' progress over the last couple of days is, in fact, a big cause for concern. They believe the inability to swallow is indicative of weak brainstem function. They do not believe that progress in learning to swallow is being inhibited by his meds or the nasal cannula. We were told that Lewis' impairment is likely to be significant (though they've no idea what form it may take), and that he is not close to coming home from the hospital at this point.
Respiratory - pretty much unchanged, still on a nasal cannula at 3 l/h. It looks like Sunday night's infection symptoms were caused by some fluid aspirated into the lungs, x-rays continue to show that things on the right side are a little hazy. Tests showed Strep B and Staph in the sputum cultures, but everything else was negative. Antibiotics were changed to treat these bacteria.
Feeding - continuous feeds had to be turned down (to 10 ml/h) last night because Lewis was continuing to have reflux. Feeds were back up today (15 ml/h) , and Lewis was tolerating them okay. He's now on Reglan, in addition to Zantac. The reflux is a real concern at this point. If it does not respond to these medicinal treatments, they will consider a surgical repair called a Nissen fundoplication. Either way, he'll eat through a tube until he learns to suck and swallow effectively, but we're told that some kids do go home while still being tube fed.
Neuro - last night's MRI was a no-go, Lewis was wide awake and wiggly at 3AM (Jenn points out that he's sharing the room with a dozen nurses, so cut him some slack). Tonight, he'll be sedated and intubated (put on a ventilator) for an MRI. If we understand it right, the results may tell us if there is significant damage to any part of his brain. An "all clear" MRI is a better sign, but doesn't mean we're out of the woods. More on that tomorrow, I guess.
Thanks again for all your support. We wish we could get back to everyone individually, but in the interim, please know that we're hanging in there, and we really appreciate your support.
Tuesday, October 21, 2008
Lots of Moving Parts
We spent most of the day with Lewis today. We learned a lot about the care he will be getting from physical therapists and speech therapists in the coming days and weeks. At first, much of it will be focused on getting him up to speed to eat normally. Many of the skills he needs for eating are predicated on stronger breathing, which will just take time. (Example: you have to be able to hold your breath in order to swallow effectively. This means that you have to be off the nasal cannula, which provides pressure to keep the lungs inflated and makes it difficult to hold your breath). This reminded us why it is so hard to predict anything at this stage - there are lots of moving parts...
Anyway, the Speech Therapist has all sorts of exercises to help him move his tongue and jaw properly for feeding. ("Speech therapy" is sort of a misnomer, at this stage).
Anyway, the Speech Therapist has all sorts of exercises to help him move his tongue and jaw properly for feeding. ("Speech therapy" is sort of a misnomer, at this stage).
No one is quite sure how long it will take to get him up to speed, but the therapists seemed to have a "when" rather than an "if" attitude, which was nice. We'll know more later in the week as they complete preliminary evaluations.
In other news - Lewis moved to new digs today. 
The NICU team removed the IV line that was going through his bellybutton and replaced it with one through his foot. That allowed him to move to a bed that should be a little bit more comfy for him. (If you didn't get Nate's school picture last year, check out the right hand side of Lewis' crib ;)
Feeding - changed to "continuous" feed through the nasogastric tube, regulated by a IV type pump. Lewis had been having some reflux problems, they're hoping this will help. Upped to 15 ml/hour.
Respiratory - still congested and having problems handling it - he continues to be suctioned pretty frequently, but his cannula is down to 3 liters of pressure (from 5 a couple days ago, meaning he is doing more of the work of breathing on his own).
Tests - tomorrow, we should have final results on all the tests from Sunday. Tonight, Lewis is scheduled for an MRI. We've been told that this won't tell us much, but is mostly helpful to establish a baseline for future scans.
Spirit - good. Lewis is moving around a good bit - last night he pulled his feeding tube all the way out. I think he got upset because somebody said he was fat.
Monday, October 20, 2008
Even Babies Hate Mondays
Okay, well, Sunday nights. Jenn and I went to visit Lewis after Nate went to bed last night. When we arrived, he was in the process of getting all kinds of uncomfy tests, up to and including a catheter and "lumbar puncture" (spinal tap). Before we got there, Lewis' temperature went up from normal (37 C) to 38.2 C (about 100.75). The change led the NICU staff to do a blood test (CBC) to check for potential signs of infection. Since his white cell count on the CBC was elevated, they were working on a full battery of tests. Most of these will take a couple of days to come back with conclusive results.
On the bright side, Lewis wasn't behaving any differently (he didn't appear to be sick). They put him back on antibiotics right away, and his fever immediately came down. This morning, he was active and awake and Jenn and I each got to hold him for a good long while. The preliminary results of x-rays and observation look positive (not likely to be pneumonia or meningitis) but Lewis will be even more closely watched than usual, until they can explain the blood count and fever.
Respiratory - still having problems with secretions, but overall respiratory strength continues to look a bit better. They are moving the nasal cannula down to 3 liters today (meaning that Lewis will do more of the work of breathing on his own)
Feeding - decreasing to 3 hour interval, still 30 Ml per feeding through the tube, they are pushing to get him off IV nutrition as soon as they can
Physical Therapy - Lewis had his first visit with a physical therapist (PT) today. She was pleased with the tone in his limbs. His 'trunk' (neck, shoulders, lower part of face) is still a little behind. The PT says that that is not unusual following the full body cooling, and that it may be exacerbated by the phenobarb. Lewis will be having PT 3x a week, for now.
The speech therapist is visiting with Lewis now, to evaluate him and work on sucking and other important baby skills. Oh, one more thing - apparently Lewis let out a pretty good war cry when they did the spinal tap. This is a great sign, since he doesn't cry and hasn't made much, if any noise, so far...
On the bright side, Lewis wasn't behaving any differently (he didn't appear to be sick). They put him back on antibiotics right away, and his fever immediately came down. This morning, he was active and awake and Jenn and I each got to hold him for a good long while. The preliminary results of x-rays and observation look positive (not likely to be pneumonia or meningitis) but Lewis will be even more closely watched than usual, until they can explain the blood count and fever.
Respiratory - still having problems with secretions, but overall respiratory strength continues to look a bit better. They are moving the nasal cannula down to 3 liters today (meaning that Lewis will do more of the work of breathing on his own)
Feeding - decreasing to 3 hour interval, still 30 Ml per feeding through the tube, they are pushing to get him off IV nutrition as soon as they can
Physical Therapy - Lewis had his first visit with a physical therapist (PT) today. She was pleased with the tone in his limbs. His 'trunk' (neck, shoulders, lower part of face) is still a little behind. The PT says that that is not unusual following the full body cooling, and that it may be exacerbated by the phenobarb. Lewis will be having PT 3x a week, for now.
The speech therapist is visiting with Lewis now, to evaluate him and work on sucking and other important baby skills. Oh, one more thing - apparently Lewis let out a pretty good war cry when they did the spinal tap. This is a great sign, since he doesn't cry and hasn't made much, if any noise, so far...
Sunday, October 19, 2008
Sunday October 19
Just got back from several hours visiting Lewis. Both Jenn and I (Josh) were able to hold him for a good long time today. Anne and Dan and Hank and Judy all came by for brief visits while we were there. Not too much change since yesterday, but moving in the right direction. We had a conversation with a different doctor today, which was tough - since the long term picture is totally unclear, it is pretty difficult to work through emotionally. All the doctors have a different perspective and the transition from one to another isn't easy. Rather than focus too much on what ifs, we're trying to stay postive and focus on each day's progress.
Respiratory - slow progress. Lewis is still is having trouble dealing with secretions from his chest, but they think they may be able to wean him from the nasal cannula within a few days.
Feeding - up to 30 ml of milk every 4 hours, and may bump up to 35 tonight. The goal is 60 to 70 ml, which would allow them to remove the IV line through which he presently gets a portion of his nutrition. The IV line is in his belly button and isn't safe there too much longer, we're told.
The Doctor is also concerned with the muscle tone in the lower part of Lewis' face. She thinks that may be slowing his ability to suck effectively. Sucking, swallowing and gagging are key reactions before he's able to feed normally. Lewis will begin working with Occupational and Physical therapists shortly on this sort of thing.
Meds - they began to cut the does of Phenobarb last night, apparently getting that down takes a while.
Respiratory - slow progress. Lewis is still is having trouble dealing with secretions from his chest, but they think they may be able to wean him from the nasal cannula within a few days.
Feeding - up to 30 ml of milk every 4 hours, and may bump up to 35 tonight. The goal is 60 to 70 ml, which would allow them to remove the IV line through which he presently gets a portion of his nutrition. The IV line is in his belly button and isn't safe there too much longer, we're told.
The Doctor is also concerned with the muscle tone in the lower part of Lewis' face. She thinks that may be slowing his ability to suck effectively. Sucking, swallowing and gagging are key reactions before he's able to feed normally. Lewis will begin working with Occupational and Physical therapists shortly on this sort of thing.
Meds - they began to cut the does of Phenobarb last night, apparently getting that down takes a while.
Saturday, October 18, 2008
Saturday, October 18 update
Jenn and Josh left the hospital at about 1:30 pm on Saturday. Overall, Lewis is doing well.
Feeding - Lewis is getting 20 ml of mom's milk every 3 hours through the naso-gastric tube, they will be increasing that, and he may be up to 25 ml tonight.
Respiratory - Lewis is still on the nasal tube (nasal cannula) at 5 liters, but he's breathing a bit more easily today. He's also getting some respiratory therapy (sort of like a vibrating chest massager) to help loosen up anything in his lungs.
Vision - A specialist checked out Lewis' eyes today, she said everything is in order and looks normal. With infants, they really can't tell any more than that until about 4 months of age, we're told, so this only means that they don't see anything unusual right now.
Neuro - The preliminary read of the 24 hour EEG showed no seizure activity, so they are starting to wean Lewis from the phenobarbitol (anti-seizure meds). This may help his sucking reflex, which is lacking right now, and is a concern for feeding without a tube.
Holding and Feeding the Baby! Jenn got to hold Lewis, while Josh fed him today (using a syringe through the tube). He generally seemed more active and alert while we were there.
Feeding - Lewis is getting 20 ml of mom's milk every 3 hours through the naso-gastric tube, they will be increasing that, and he may be up to 25 ml tonight.
Respiratory - Lewis is still on the nasal tube (nasal cannula) at 5 liters, but he's breathing a bit more easily today. He's also getting some respiratory therapy (sort of like a vibrating chest massager) to help loosen up anything in his lungs.
Vision - A specialist checked out Lewis' eyes today, she said everything is in order and looks normal. With infants, they really can't tell any more than that until about 4 months of age, we're told, so this only means that they don't see anything unusual right now.
Neuro - The preliminary read of the 24 hour EEG showed no seizure activity, so they are starting to wean Lewis from the phenobarbitol (anti-seizure meds). This may help his sucking reflex, which is lacking right now, and is a concern for feeding without a tube.
Holding and Feeding the Baby! Jenn got to hold Lewis, while Josh fed him today (using a syringe through the tube). He generally seemed more active and alert while we were there.
Holding Lewis
Here are some photos of Jenn and Josh holding baby Lewis on Friday, October 17th.
He is a beautiful baby! (according to his aunt Joanne!)
As of Friday afternoon:
Things are more or less the same as yesterday. That means no great progress has occurred, but no regress either.
Lewis is still breathing with the assistance of a nasal cannula (nasal tube) with ambient air. He's still having trouble with secretions (mucus and saliva), and is breathing faster than the doctors would like.
He's got better muscle tone (control of limbs) and "body posturing."
On Friday, the 24 hour EEG was removed, and we're hoping it will be read prior to the weekend, but the preliminary look by neurologist indicates no seizure activity. (good news) Also, the twitching (subtle seizures) has stopped.
Lewis' sucking reflex and gag reflex (both very important for normal feeding) are not as good as the doctor would like. As of Friday night, Lewis is receiving 15 mls of mom's milk every 4 hours (via a feeding tube). He's tolerating his food pretty well and is resting comfortably.
A big positive for everybody: Mom and Dad were both able to hold Lewis today.
He is a beautiful baby! (according to his aunt Joanne!)
As of Friday afternoon:
Things are more or less the same as yesterday. That means no great progress has occurred, but no regress either.
Lewis is still breathing with the assistance of a nasal cannula (nasal tube) with ambient air. He's still having trouble with secretions (mucus and saliva), and is breathing faster than the doctors would like.
He's got better muscle tone (control of limbs) and "body posturing."
On Friday, the 24 hour EEG was removed, and we're hoping it will be read prior to the weekend, but the preliminary look by neurologist indicates no seizure activity. (good news) Also, the twitching (subtle seizures) has stopped.
Lewis' sucking reflex and gag reflex (both very important for normal feeding) are not as good as the doctor would like. As of Friday night, Lewis is receiving 15 mls of mom's milk every 4 hours (via a feeding tube). He's tolerating his food pretty well and is resting comfortably.
A big positive for everybody: Mom and Dad were both able to hold Lewis today.
Friday, October 17, 2008
the background
Friday, October 17, 2008
This blog has been created in order to help all our friends and family keep up with what's going on with Josh and Jenn's new baby. Lewis Jack was born on Friday afternoon, October 10th. Unfortunately, after a pretty long labor, Jenn suffered a uterine rupture as she was being brought to the operating room at Arlington Hospital. Lewis was delivered by emergency c-section. He was 9 lbs 1 oz and 22 inches long.
Jenn was very lucky; she is all sewn up and has an incision just as one would from a c-section but is doing fine. She was at Arlington Hospital until Tuesday morning recovering. Since Tuesday, she's been recovering at home, with frequent trips to see Lewis at the hospital.
When Lewis was born, he wasn’t breathing. Though his heart was beating, it isn’t clear how long his brain was without oxygen. He was initially treated in the neo-natal intensive care unit (NICU) at Arlington. After a couple of hours, he was rushed to Georgetown Hospital's NICU. Georgetown has a special fully body cooling machine which is used in the treatment of brain insults to infants. This is a very new treatment that is not widely available. (After the fact, we learned that much of the pioneering work on this type of treatment occurred at Georgetown). Lewis also suffered seizures and was immediately put on anti-seizure medication (a sedative).
The full body cooling began Friday afternoon, within 4 hours of birth. The cooling process is designed to slow the brain’s metabolism, preventing secondary injuries which are caused by the loss of oxygen to the brain. The doctors brought Lewis’ body temperature down to 33.5 centigrade (about 92.3 degrees F) and held it there through Monday afternoon. During this time, Lewis was breathing with the aid of a ventilator. Multiple tests were performed to assess the function of his heart, kidneys, liver and lungs. In general they showed that those systems were getting stronger, moving towards normal. He did continue to shudder or twitch occasionally, it looked like he was just cold, but it also might have been what the doctors call ‘subtle seizures’.
On Monday, October 13th, the NICU team warmed Lewis back to normal body temperature, over a period of about 6 hours. He came through the process well, with no additional issues surfacing, but he continued to have occasional subtle seizures.
Since then, Lewis has had a short hour long EEG which seem to be fine and a longer one which has yet to be read. He went back on forth on breathing support – on and off ventilation twice, but by Thursday, he was breathing room air (no additional oxygen) with just a nasal tube providing some added pressure. He was still having a lot of trouble with what the doctors call “secretions” (saliva and mucus) that have to be suctioned pretty frequently. Lewis is still being medicated for seizures but moves his arms and legs, clasp onto fingers, responds to light appropriately.
The NICU is pretty strict about visiting. Only two visitors at any one time, and one of them must be a parent. Jenn and Josh have visited daily and since Thursday have been able to hold Lewis. Grandparents Didi and Bop (Judy and Hank) and Babu and Nanny (Raymond and Susan) have spent time with Lewis too.
Nate, Lewis' big brother, is doing ok, with lots of attention from grandparents, his Uncle Danny and Aunt Anne, and his regular nursery school and babysitting routines.
Updates to this blog will be done regularly while Lewis is still at the hospital. Joanne, Josh's older sister, (that's Auntie Joanne to Nate and Lewis!) will help with this. Please feel free to leave comments, positive thoughts, prayers, good vibes, and anything else you want to say to Jenn and Josh here.
Thank you for all the love, support, and care you've sent to Lewis and family this week. We are very grateful.
This blog has been created in order to help all our friends and family keep up with what's going on with Josh and Jenn's new baby. Lewis Jack was born on Friday afternoon, October 10th. Unfortunately, after a pretty long labor, Jenn suffered a uterine rupture as she was being brought to the operating room at Arlington Hospital. Lewis was delivered by emergency c-section. He was 9 lbs 1 oz and 22 inches long.
Jenn was very lucky; she is all sewn up and has an incision just as one would from a c-section but is doing fine. She was at Arlington Hospital until Tuesday morning recovering. Since Tuesday, she's been recovering at home, with frequent trips to see Lewis at the hospital.
When Lewis was born, he wasn’t breathing. Though his heart was beating, it isn’t clear how long his brain was without oxygen. He was initially treated in the neo-natal intensive care unit (NICU) at Arlington. After a couple of hours, he was rushed to Georgetown Hospital's NICU. Georgetown has a special fully body cooling machine which is used in the treatment of brain insults to infants. This is a very new treatment that is not widely available. (After the fact, we learned that much of the pioneering work on this type of treatment occurred at Georgetown). Lewis also suffered seizures and was immediately put on anti-seizure medication (a sedative).
The full body cooling began Friday afternoon, within 4 hours of birth. The cooling process is designed to slow the brain’s metabolism, preventing secondary injuries which are caused by the loss of oxygen to the brain. The doctors brought Lewis’ body temperature down to 33.5 centigrade (about 92.3 degrees F) and held it there through Monday afternoon. During this time, Lewis was breathing with the aid of a ventilator. Multiple tests were performed to assess the function of his heart, kidneys, liver and lungs. In general they showed that those systems were getting stronger, moving towards normal. He did continue to shudder or twitch occasionally, it looked like he was just cold, but it also might have been what the doctors call ‘subtle seizures’.
On Monday, October 13th, the NICU team warmed Lewis back to normal body temperature, over a period of about 6 hours. He came through the process well, with no additional issues surfacing, but he continued to have occasional subtle seizures.
Since then, Lewis has had a short hour long EEG which seem to be fine and a longer one which has yet to be read. He went back on forth on breathing support – on and off ventilation twice, but by Thursday, he was breathing room air (no additional oxygen) with just a nasal tube providing some added pressure. He was still having a lot of trouble with what the doctors call “secretions” (saliva and mucus) that have to be suctioned pretty frequently. Lewis is still being medicated for seizures but moves his arms and legs, clasp onto fingers, responds to light appropriately.
The NICU is pretty strict about visiting. Only two visitors at any one time, and one of them must be a parent. Jenn and Josh have visited daily and since Thursday have been able to hold Lewis. Grandparents Didi and Bop (Judy and Hank) and Babu and Nanny (Raymond and Susan) have spent time with Lewis too.
Nate, Lewis' big brother, is doing ok, with lots of attention from grandparents, his Uncle Danny and Aunt Anne, and his regular nursery school and babysitting routines.
Updates to this blog will be done regularly while Lewis is still at the hospital. Joanne, Josh's older sister, (that's Auntie Joanne to Nate and Lewis!) will help with this. Please feel free to leave comments, positive thoughts, prayers, good vibes, and anything else you want to say to Jenn and Josh here.
Thank you for all the love, support, and care you've sent to Lewis and family this week. We are very grateful.
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